How do you know if you are doing the right therapy for your child? With so many “remedies,” “cures,” and paths to take, how do you know if you are on the “right” one? How do we know if it’s “working”?

Like most things in my life, my answers didn’t evolve gradually; they hit me over the head. There’s a story about a man so eager to “help” a butterfly into the world that he opens its chrysalis too soon. The result is tragic: the wings never develop properly, the butterfly cannot fly, and it dies. I tell this story to parents and educators who seek to force kids with autism to be something they are not, who pressure them into compliance or try to coerce them to be part of this world before they are ready. My experience with my son Neal – who I adopted from a Russian orphanage at age two and who was diagnosed with autism a year later – has taught me that we must yield to slow yet natural progress: caterpillar to chrysalis to beautiful creatures that can soar on their own. But it took me a while to learn this for myself.

I had a significant “a-ha!” moment when Neal was seven years old. I had been taking Neal out into the community quite a bit, trying desperately hard to have a normal life and fit in. Anything that Neal was interested in, I pursued. Because Neal loved butterflies, I was overjoyed to hear about a butterfly exhibit that was coming to the Los Angeles Natural History Museum. It sounded extraordinary, a “Pavilion of Wings.” The brochure read, “Stroll through a beautifully landscaped exhibit, see Monarch butterflies, giant swallow tail butterflies, and more.” I couldn’t wait.

I prepared Neal with butterfly books and manuals. We acted out the life-cycle of a butterfly. We crawled like caterpillars, munched on leaves, and rolled ourselves into a cocoon and wait, wait, waited, until we developed wings. Then we flew around our house in a rainbow of laughter. I had often used this kind of creative play in my career as an acting coach for children. Being able to use these techniques with my own boy was even more rewarding. We had so much fun together.

Finally, the exhibit opens, and on that day I get Neal into the car effortlessly and we head downtown to the museum. Neal is a little reluctant to walk across the large parking lot, but once he nears the exhibit, his eyes widen with excitement.

We enter the Pavilion. Neal is in awe: hundreds of butterflies in all shapes and colors flick and flutter around us. Neal loves the butterflies. He loves them too much. When he sees these familiar, angel-like creatures, he wants to get close to them, to smell them, to touch them. He starts reaching out ecstatically to touch each butterfly. Like King Kong snatching airplanes from atop the Empire State Building, Neal grabs for butterflies.

“He’s killing the butterflies!” shouts a little boy.

“Butterfly killer,” screams a tiny girl.

Now all the kids and adults are yelling, “Stop him! Get him! He’s killing the butterflies!!!

”Murderer!”

This terrifies Neal. He grabs a plant and pulls it out of its pot. He knocks over other pots. The butterflies are flapping wildly. A security guard swoops in.

“I am so sorry,” I keep saying. “I am so sorry. He has autism. He loves butterflies. He didn’t mean to harm them.”

“Get that kid out of here!” someone shouts, loudly enough to be heard over the others who are still screaming at Neal.

But Neal doesn’t want to leave. He is actually quite amused by the commotion he’s causing, and I can’t get him out of the exhibit. Finally, I see some plastic, made-to-look-real butterflies on the gift shop counter. I rush to the front of the line. People glare at me for cutting in. I beg to buy one of the pretend Monarchs. I can’t wait for change, so I place a $10.00 bill on the counter, grab a fake butterfly, and race back to Neal. I use this insect amulet to coax Neal out of the Pavilion, through the long parking lot, and back to the car.

Sitting in the car, Neal and I stare blankly out the front window. I look at Neal. I see the puzzled look in his eyes give way to sadness. I start to cry. Neal stares back at me. He gets teary-eyed. He’s ashamed of what happened. We look long at each other. The tears give way to smiles. The smiles become laughter. It’s one of those situations in which everything is so terrible, that it’s ultimately absurd.

But that night I pray. “Dear God, I need help. We need help. It’s just not working.”

I fell apart that day. I surrendered to the fact that our lives are just going to be a bit different from the norm. “Abbynormal,” I like to say. From that day on I became 100% committed to keeping Neal at home and bringing in creative folks – actors, musicians, writers – to join his world, until he was ready to be in ours. Gradually, inch by inch, Neal did, indeed, emerge from his cocoon as a glorious butterfly – but on his own schedule, not mine. Among many other things, now Neal can sit patiently and watch a butterfly float by without any need to “possess it.”

Through writing my memoir, Now I See the Moon, I was able realize that some things in life, as in nature, cannot be rushed. Luckily, the right teachers, the right programs, the right books, and the right methodologies always appeared just when I needed them most. Neal will always be my guide as to what he is ready for and when he’s ready for it. A caterpillar knows best when he is ready to break out of the cocoon and emerge as the graceful butterfly he was always capable of becoming.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

What a beautiful Story? I can actually picture you guys in the museam. I have had many of those moments but with mine i have to physically drag my son out. I feel you gave me some words for Jake’s father, grandparents, aunts and uncles. Everyone expects more from him. They expect strong discipline for my son to learn and that isn’t how he works. It is a long process of teaching him that he is learning. He has a tough time communicating with people. He has the words in his head but cant get them out to tell us what is upsetting him. Thanks for sharing that story. I will always remember it and pass it on.

Dear Barbara,
I am so pleased that my story has been helpful to you. Yes, people so often misunderstand our kids. They interpret sensory processing overload to “bad behavior.” Some strategies for communication that worked for my son, and I speak at length about this in my book, “Now I See the Moon,” is a choice board. I write down (or use pictures – the new ipad has an app called proloquo2go), and have him point to what he is feeling or thinking. This has been very helpful. You may also remind your “strict” relatives that the word ‘DISCIPLINE” means “to disciple” or to “teach.” NOT to punish. Many blessings, Elaine

Thank You so much for sharing such an enpowering message of love & rsspect for your child. Most children who have a developmental disability most of the time exhibit the excitable personality traits you described. Their need to use all of their senses are so strong when they are happy is hard to control. I experience a similar situation, but it involved food,and my son who has a neurological disability needed to TOUCH everything he saw. So it can be very difficult to explain at that moment, as the man and customers look at you and ur child with eyes of disgust…saying teach your child right!!!!
Enjoy Your gift of love….as I do with my son, and the students I work with who have autism, give me everyday. ,)

My daughter with Autism also LOVES butterflies….we took her to a butterfly exhibit in Missouri and she behaved rather well. I can not even imagine people yelling at her or me, and I cried when I read this story. But in the end I smiled because I saw an incredible mom with so much patience have nothing but respect and love for her son. She is correct….parents with autistic children must learn what works for their children to help them come out of their cocoons.

so very beautiful!!! it touched my heart very much. my son is 4 and he also has autism. I am so glad you put this up here, the more I read about peoples stories and watch helpful documentaries about other kids with autism, the more it educates me. but nothing educates me more than my own son. i feel that if people cannot deal with it, then they can get over it. the kid has problems of his own without having to worry about what other people think. God Bless this kid, I bet his heart is so beautiful!!!!! as is his momma’s!!!

Wow. I needed that story today, trying to make sense of school buses and therapy appointments and meltdowns. It has given me hope that my son will come out of his cocoon in his own good time. And, if he does not, I guess we will just have to crawl in there with him! Bless you for sharing.

Elaine your post is so very touching. It completely describes what we parents experience with our kiddos in public situations. I first learned of your story in the documentary Autism the Musical and I am so very glad that you now have a book. You are such a positive person and seem to see the goodness in even the toughest situations. I wish you the best with your son and with your new book. Thank you for sharing with us. Love Angie

This story was breathtakingly sad but happiness did arise from it as a lesson to not push a living, breathing person or living object until they feel they are ready to face challenges. I see my son in this story and it brought tears to my eyes on how peoples reactions set off panic because it may not seem normal to them but in actuality what is normal? People are so quick to judge and dismiss others who may not be able to defend themselves. Thank You for this wonderful story of your son and butterflies.

I so agree with you! What is “normal” any ways? When I was growing up, all I ever wanted was to be normal – to be “one of them.” After writing my memoir, Now I See the Moon – i came to realize that the “normal” I so desperately crazed was actually self acceptance. and that was what my son, Neal, has taught me. Unconditional Love and Acceptance. Go figure! Thank you for your beautiful comment.

“but on his own schedule, not mine” makes SO much sense. Its a message I give to the parents I work with. Patience and giving up on “controlling” anything helps build amazing relationships and bonds. I’m always inspired when reading your words, thank you again for sharing;)
Best~
Shane

I love your pure stories Elaine for these are the special moments we have. We are in charge of our sons with Autism. But ultimately they are there own being. Elijah will do as he pleases. Not everyone will understand and thats okay.

Your truly have a gift with words. Thank you for sharing your life with the world, you have an amzing perspective on life and autism. I have a 4 year old and a 3 year old with autism, and seeing Autism the Musical and reading your book as truly changed my life and the joy that I find in my children everyday. Thank you Thank you Thank you

I HAVE A SON WHO HAS AUTISM …I WENT TO THE WEBSITE AUTISMSPEAK.ORG AN WAS TRYING TO FIND OUT WHERE CAN I GOT TO GET SOME SERVICES FOR MY SON BUT THEY DIDN’T SUPPORT LOUISIANA IS THERE ANYONE THAT CAN HELP ME

As a parent of an adult son who has Asperger’s Syndrome, I was experimenting with ways to help my son when Asperger’s Syndrome was intially brought to the surface years ago. I was teaching the doctors and teachers how to handle my son. I cried so many times in frustration when doctor’s and teacher’s handed me back my out of control son, telling me they didn’t know what to do to help him. Today I’m thrilled to hear how much Autism is being talked about and how much parents are willing to help each other. I felt so alone in my world. Today my son has successfully finished college, (a degree in electronics, 2 yr.) is still somewhat a loner, no friends, living at home, but has come somewhat out of his shell, next stop, finding him a job. Bravo to your book and to you as a mother who also had to find the means to help your son. Much future success. Claire